Guest Series: Part 2 - Of Duct Tape and Half-Lives

“Great. Then just do that however you want,” I retort, attempting to shield my sarcasm. At this point I am laying out on the floor, spasming and twitching about without any control of my body or its movements. I am straining to speak because the spasms are taking over my torso and I have to fight the contracting muscles in my chest to take each breath and to get out each word. As a result my voice is quiet and my breathing is laboured. I find myself taking breaks from paying attention to what is happening around me just so I can catch my breath. Of course I don’t want to admit this, because adding an oxygen tank into the mix is not really high on my list of fun things to do this evening.

“Now how are we going to keep you in there?” asks the nurse, while she physically holds me in place. We already put my anti-tip bars down - which are these thin tubes that extend from the back of my wheelchair and are designed to catch me should I start to flip over backwards. I am hesitant to point out that I can tip over past them as this would just add to the anxiety in the room. My wheelchair doesn’t have a seat belt and so I suggest duct tape as the answer to the rest of it. With that the receptionist goes to find some.

At this point there are 3 of us in the room: my friend Shoshana, who was pulled from their comfortable evening at home to save me, yet again, from this latest health related mishap; the nurse who gave me the injection in the first place; and me. Flitting around us, in and out of the space, are the receptionist and my family doctor. Shoshana and I take this all in stride, having experienced a range of ridiculous health-care-related emergencies together over the years. We are laughing, and the anxious nurse seems to feed off of this dynamic and relax a little, all the while using her own body to ensure I stay in the minimalist wheelchair.

My doctor’s head pops around the corner and she sees that I am now back in my chair. “How are you going to stay in that thing?” she asks, giggling to herself at the absurdity of the scenario. “We’re going to duct tape me into my wheelchair!” I exclaim. Before I can really finish the sentence, she jumps in on a rather long rant about how terrible of an idea that is. She is clear in stating that she would prefer to see me in an ambulance, but to say I am against that idea is the understatement of the century. At this point she realizes she is just happy I agreed to get into my chair at all and go to the hospital. Unlike with morphine, these contractions are not stopping, and my body is continuing to spasm and wiggle about. Despite my distinct opposition the hospital, the discomfort is too great, and I’m not entirely sure I will be able to do much at home even if I make it there.

“Found some!” says the receptionist as she returns with the roll of black duct tape. The nurse takes the end of the tape and holds it onto my wheelchair. The receptionist takes the roll and begins to wrap it around my body. My doctor is laughing, as are the rest of us, as my body is restrained with the thick sticky ribbon. The roll runs out after two wraps, but it is enough to hold me in. A note is printed off detailing the events of the evening, my guide dog Penny is tied to my leg, and we are on our way.

As Shoshana pushes my wheelchair toward the elevators my doctor, the nurse, and the receptionist all follow us out. “Email as soon as you get there! And then when you leave to let us know what happened!” says my doctor, still giggling but with an obvious look of concern.

In the elevator I turned to Shoshana and say, “I think I just need IV diazepam and this should stop.”

We get down to the lobby and go out the doors into the mild spring air. It is April 29th and green grass is started to pop up in isolated patches. The hospital is not far from the doctor’s office, only about 2 blocks. We stick to the smaller side streets, and in minutes, we arrive at the sliding glass doors of the hospital emergency department.

Now this is where things start to change. I actually hold no memory of the first little bit in the ER. I have bits and pieces, but I am mostly going off of what I’ve been told by Shoshana. I have vague memories of arriving in the ER, toppling sideways of my wheelchair, being surrounded by nurses and emergency responders, trying to swat them off - failing- and picked up and being placed on a stretcher. That is it until the next day. You see, when you’re spasming the way I was, the first line of treatment is a class of medications called benzodiazepines. These medications are sedatives that work to relax muscles and calm your body. In low doses they are used to treat anxiety or as sleeping medications. When used in conjunction with narcotics, medications used to treat pain, it can cause amnesia and this is exactly what happened to me.

From what I’ve been told, I spent about four hours waiting to get into the ER. I was placed on a stretcher in the waiting room where I sat with Penny. She was right up on the stretcher with me. Penny is a Hearing Ear Dog and she is trained to alert me to sounds in my environment like people calling my name, knocks on the door, my telephone ringing, the wake up alarm, kitchen timers, and the fire alarm. I am Deaf and when we are in public she also helps me to be aware of my surroundings as I watch her respond to sounds and turn her head to look. She also knows how to pick up items from the ground and hand them to me and she will let me balance on her when I am transferring in and out of my wheelchair. Penny goes everywhere I do and apparently that also meant that she slept on the stretcher with me in the ER waiting room.

When I was finally brought back into the ER I was placed in somewhat of a patient fish tank. The walls were glass and see through, but covered with curtains to shield me from the outside world. The space was small, maybe 9ftx9ft and filled with medical equipment. There was barely room for Shoshana and my wheelchair in the tiny amount of free space that existed. To my left was a curtain wall, sans glass, that divided me from the patient next me. Several people came and went from that space during my time, but I fail to remember any of their stories.

At the beginning of it all I vaguely remember a nurse coming in to start and IV and take my blood. I instructed her to be sure to check my CRP, or C-Reactive Protein, which is a blood marker that can show levels of inflammation in the body. For me it is a good indicator of Behcet’s activity and a way that we keep tabs on my disease and the efficacy of my medications. I remember being impressed when they actually listened to me and ordered the test. I do not know this nurses name, as I only referred to her as “nice nurse” in my highly medicated state.

I remember the first doctor I saw being an average-looking, middle-aged man. He was an ER doctor and was expressionless for the entirety of our interaction. He told me, with his straight face and bored posture, that he didn’t think this had anything to do with the injection of methotrexate. He did not know what it was, but it was not that. However, I was not responding to the muscle relaxants they were giving me and I was in a lot of pain. It was early morning at this point, around 2 or 3am and exhaustion was starting to kick in. At a loss, he put a call in to internal medicine asking for them to come down and consult on the case.

The easiest way to explain what an internal medicine doctor is, would be through the TV program House. They are kind of like a general practitioner, only a bit more specialized to processes within the adult body. My interactions were limited to residents, who are doctors that have completed their training, but who are not yet able to work unsupervised. They manage their own cases, but always consult with an attending physician before making decisions on final courses of treatment and management. I have no memory of my internal medicine consult, but from my understanding they did think it was the methotrexate and explained that as the medication came out of my system I should see improvement. I was told the half-life, which is the amount of time it takes the concentration of medication in my blood to reduce to half the initial dose concentration, was about 15 hours and that we would watch me until then.

As 15 hours came and went, again with no change, internal medicine decided that neurology should consult. Neurologists are doctors to specialize in the brain. Even though my muscles were contracting it was like the result of my brain misfiring in some way and it was important to involve them in the process of diagnosis. The neurology resident was young, around 26 perhaps, and he was much more friendly than the ER doctor. He said that it may take several half-life cycles for me to see improvement, depending on my sensitivity to the medication. It could take a few days, but they were confident that it would resolve itself. The plan was to simply “watch and wait” to see how my symptoms progressed and how I managed. During that time we would medicate the pain, augmenting my normal pain management system to take into account the increase in discomfort, and allow me regular access to muscle relaxants on an as needed and “on-demand” basis.

It was agreed that while we were waiting to see what happened I would be admitted under internal medicine since I wasn’t able to safely care for myself at home and we weren’t too sure how my medication needs would change and shift over time. The admission procedure began, which includes a visit from the internal medicine attending and a series of screening tests to make sure I am not infected with some kind of antibiotic resistant super bug. Finally, after roughly 24 hours in the ER, I ended up on the 12th floor admitted to the “Express Admittance Unit” also known as the EAU for short. This is a unit designed for max 72 hour long stays and it would be my second admission to it in a year.

[Part 3 will follow next Wednesday.]

Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/